Graves disease

Hello, I was wondering if anyone could give me some advice. I have had Graves' disease for 20 years, some of that time only on 5 mg carbimizole but currently on 20 mg. I also have a rare thing called gittelmans syndrome which means my body excretes potassium from the my otherwise ok kidneys, I'm on dissolvable potassium tabs for that.

My question is this can I still avoid surgery ( I'm 48) can it still have a chance of burning out? Is it too dangerous to continue with carbimizole for this long? My surgeon is wearing me down and I'm now on the waiting list for surgery but all I'll do is exchange one set of symptoms for another. I have tried most alternative mess and I'm also gluten free and very conscious of eating pure food. Is ther anyone who can advise, please help.

14 Replies

  • Brightsea, there's no reason why you shouldn't continue on Carbimazole if you don't want surgery which, as you say, means swapping hyperthyroid symptoms for hypothyroid symptoms. There is a member who is doing well on Carbimazole for over 10 years.

    Use the HU search function and search posts on RAI, Graves and Carbimazole to see discussions on the subject.

  • Thank you. I will give this a also going to try the paleo diet as it's linked to auto immune. Many thanks

  • Apparently there is a link between Gitelmand syndrome and hyperthyroidism. Which did you have first?

  • I was diagnosed with gittelmans after graves but apparently docs think I was born with gittelmans as it genetic. I'm so glad you have found a link as I've been asking if this the case for years and the specialist just looks at me like I'm mad! Do you know where I can read about it. Many thanks

  • There is also thought to be a genetic predisposition to Graves.

    I just googled 'Is Gitelmans syndrome associated with hyperthyroidism' and the Graves links came up. I think there were some research papers on there too, handy to print out and show to these 'specialists'!

  • This is fantastic news after 20 years. I will look it up. I guess I was beginning to think I was imagining it so was giving up. Anyway thank you so much. I have tried everything alternative up until now but I think I need to get to the culprit of what's causing the auto immune, in my case this could well be the gittelmans. And since it all begins in the gut, paleo just makes so much sense.

    Many thanks. I'm glad to see you're on a low dose of carbimizole and hope that you will be able to drop it soon.

  • Couldn't find what I was looking for! So tried different tag lines and came up with a very long (sorry) but very indepth article about the thyroid and kidneys. How being hyper & hypo can affect kidney function and also treatment for thyroid problems can affect the kidneys.

    Read it when you have a quiet few hours!!

  • Sounds like you are doing a lot of right things, I'd try Paleo (got Diane Sanfilippo's Practical Paleo, easy...) I also have acupuncture and see medical herbalist.... x

  • oh, I'm on 5mg carb every other day and if when I come off the drug next month and relapse that's what I aim to go back to xxx

  • How do they treat Gitelman's Sydrome?

  • I have to take dissolvable potassium Sando k four times a day. Almost died a few years back as it's a risk on the heart but I'm on the right dose now so that just ticks along and it will be like that forever. Makes me tired but then so does graves as you know. If I can just get a handle on the graves and avoid surgery I will be so happy. X

  • Maybe over or under treatment of the Graves caused or exacerbated the Giterman's?

  • Thanks for link. Yes I think you're right about wrong dose for graves plus I think stress plays a big role in the graves. I take herbal too and it seems to help.

  • hi there, I know this post is 2 years old but I'm also fed up with being almost bullied towards surgery for my graves that i have 9 years now. I went into remission after 5 years and then after baby no 2 at came back! I only took anti t drugs for a few months and am now going to go gluten / wheat free (my mum is celiac) so hoping it will help! Can I ask how you've been getting on? thanks

You may also like...